Feeling sorry for dad. Any advice on improving his quality of life?

Hello Carelotsss,
My mother, 85 yrs., had severe retention for a long time. The doctors did not do anything for her. But when she had to go to rehab they "discovered" that she was retaining so much urine that they catherized her for a few weeks, gave her a medicine called Flow-something, and then she stopped retaining. (It really bothered me that it took years for the doc to give a medicine that helped so quickly! What is wrong with doctors!?) Maybe you can ask about that (or some other) medicine for your father.
Anyhow, it sounds like your father has a better, more interesting life than my mother. She won't get out of bed, sits there all day long, won't read unless practically coerced, won't watch anything, will not go anywhere, etc. I really feel for her but she chooses to have this kind of life. I wish so much that she would show a little interest in something, anything.

May God help you to make a nice life for your father.

its tough i had a stroke, and i do the same things as your dad. i am a 65 old woman and i do as many exercises as i can, i walk with a hemiwalker and i was once independent like your dad....i wish i was dead....rt side affected,

Thank God you both are there for each other..

Due to LBD, my Dad was no longer able to drive..He did enjoy car rides..I would take him through the countryside, beaches, etc..Loved the warm sun on his face. Sometimes we drove 2-3 hours..With more decline, I had meals with he & Mom, held his hand while he sat on the couch & watched his favorite movies.Held his hand when he was bedridden.

Hope this helps. Tough on all when dependence needs change. Blessings to you both🙏🏻❤️

Can I ask why he isn't getting out-patient rehabilitation? Was he in a rehab hospital after his acute care for the stroke? He also needs to see a neuro-optometrist or neurologist-ophthalmologist to tell you if he is seeing double or has lost half of his vision or worse. A neuro-optometrist may be able to actually help Dad regain sight lost from the stroke, and diagnose or treat other vision disorders that will prevent him from compensating for his vestibular or motor impairments to balance and coordination. (noravisionrehab.com will have links to providers for his vision disorders.)

Carelotsss: Perhaps you can be grateful for the things that he can still do. Do NOT feel sorry for your father. Celebrate him.

Vitamins, minerals, vitamins, minerals. Look up on line for specific types your dad will need. The basics multi-vitamin, vit C, vit E, Vit D, B complex, Tumeric, Omega 3's, eating plenty of vegetables, stay away from beef and chicken. turkey is best or plant based. He can detox with DE (Diatomatious Earth). Out in the sun every day for an hour. A routine of activities 3 times a week that he enjoys and out to eat at least once a week. Something to look forward to.

Does he enjoy playing checkers or card games that can be played between two people? Is he able to sit up in a chair and do that? If so perhaps someone could have a standing checkers or a car game with him every day at a certain time. To give him something to look forward to.

A slice of dessert and decaf coffee or other beverage every day at a certain time.

ANYTHING to look forward to

Shift your intention / Refocus - be grateful for what he can do:

Should dementia patients watch TV?
For men and women with Alzheimer's disease or other forms of dementia, it can be especially beneficial. Watching movies and TV shows can help keep their brain active, which can stimulate positive memories, improve mood, and even increase socialization.

* As independence declines, it is the little things that greatly matter, i.e., smiling while holding his hand, giving him a hug, or gentle massage, bringing him a bouquet of flowers.
* Shift your energy to the positive 'little joys for his comfort' - he will feel it.
* Be grateful for every moment through presence. This is the gift to both of you.

* While perhaps difficult, stop thinking so much and be present, feeling gratitude for the time you've had with him and the special moments throughout your life.
Shifting like this will create positive energy fields and he'll get it / feel it / and both of you will benefit.

Touch Matters / Gena

This really resonates with me this am.

My SIL and BIL came by last night and we got to discussing DH's mother, who has become a complete recluse. SIL was talking about how she had dragged MIL out of the house last week to a dr's appt and how awful it was. MIL was just sitting in a completely dark house with the TV on. She was asleep in her recliner. She gave SIL a lot of pushback b/c she didn't want to leave the house. SIL just made her go, but after the dr's, they went to lunch and MIL fell to pieces.

I guess the day ended with both SIL and MIL crying--my SIL is an angel on earth and MIL is LUCKY to have her.

MIL lives alone. (She shouldn't be, but that's another battle). She only lets SIL and the cleaning lady in. She eats pre-cooked meals and basically sits all day long in her recliner and doesn't DO anything. Massively depressed and refuses to treat for it. (She's 92 and will live forever, so her kids all think an antidepressant might not be a bad thing).

She doesn't want visitors beyond my DH and his sister. She hates (there isn't a word that describes how much) me and my BIL. BIL can handle her with laughter and joking and she despises him. He's a better man than I am--for sure.
We talked about a couple of things for helping her, but the truth is, she wants to be left alone, to wallow in the anger and vitriol of past hurts and slights. She has a LOT of grands, great grands and she hasn't seen most of them. She doesn't want to. I have never had a conversation with her where she didn't get 'down' on anyone and everyone--how horrible her life has been. EVERY. SINGLE. TIME.

I told SIL I would happily do anything that could be done from a distance--I could grocery shop and leave the groceries on the porch--but SIL said that wasn't really 'enough' help. I guess she is going up there 5 days a week. I see the exhaustion in her eyes and I feel terrible, but I am not the solution.

DH is semi-retiring in Feb. I told him he needed to spell off his sister, no matter how unpleasant he finds it. He's already mad about it, but he needs to help more.

I just lost a friend (age 67) to pulmonary fibrosis. A more chanrming, lovely, talented LOVING person you'll never meet. The irony that her life was cut so short and my miserable, angry MIL continues to live a life that's dark and depressing is not lost on me.

I had an accident that landed me in a wheelchair. I am also on dialysis. It's all tiring and my quality of life isn't as it used to be. But what I don't want is sympathy or being told I need to do this and that. There are days that all I want to do is sit in my chair and nap or watch TV, maybe read some. Leave him alone and don't make big deal about and for certain don't cry about it. If he's content let him be. And I abhor the busy work or the looking at photos. It makes it more depressing to see what I could do in the past.

I can relate because my Sister has Parkinson's disease and is in a nursing home. Give him something to do. One of my friend's Mother had a stroke so she makes her feel useful by having her take part in cutting up everything that goes into their salad. Does he like comedy? I just bought a bunch of Johnny Carson tapes for my Sister. I always tell her how much I love her and I don't treat her like a cripple. Talk about some past enjoyable moments that you and your Dad had. As far as him finding words to express himself, bring him to a neurologist...they have exercises (mental) that can help him. I wish you the best. Just sit there and things other than Medical, that you can do together or separate that have nothing to do with Medical.

my 92 yo dad also had a stroke last year. He spent 5 weeks in the best local acute rehab in their city. He came home and continued to progress with HHC PT. So I definitely recommend that. Therapist said sometimes they improve more in their own familiar environment and those old "tracts" of memory about showering and toileting and routines can be gotten back into and they progress. It happened for us but he still needs help and 24 hr supervision. As far as activities, my dad does about what you described too. He reads and rereads the local newspaper every day and enjoys that. He watches the Business News channel for about 2 hours in the morning. He enjoys following if the market is up or down and since the channel has live information in giant red and green numbers, he can follow. He watches the local news at 4 or 5p and mostly for the weather and traffic conditions. I monitor so nothing to disturbing is on for too long. He watches baseball during the season and football now. We have a few recorded episodes just in case and a few recordings of his favorite musical program on PBS. He enjoys PBS Nature and some PBS cooking shows. Simple and nature and beautiful scenery. Nothing with too much dialogue, too young, too complex or filled with current slang or issues. He gets agitated to turn the channel. We have his recliner positioned so he can see out the large glass front door and watch what is happening outside, who drives by, walks by, mailman, cat at the door ready to come in. He enjoys that. Get a glass storm door where he can see out if you dont already have one. We had one caregiver who played dominos with him and he enjoyed that and was totally entertained for 2 hours. We found he has no interest in going back into his home office and sorting through banking statements and investment stuff, and the mail, what he used to spend hours doing. He has R hand weakness and can not write clearly and he is very frustrated by this. We tried a couple times but he was overwhelmed and agitated. Our caregiver is good about doing the stretchy exercise bands with him for upper arm exercises. Usually about 5 minutes a session and he is done. That's about it. yes, I understand. It is a grieving process from what was to what is. I talk to him like I always did, probably a little slower and a little clearer and reassure him everything is okay, a lot. ie: I got the mail, the garage door is closed, the garbage can is in or out, depending. The yard is fine. All the things he used to do. Reassuring him all is ok. Someone told me to smile more and I do and he returns the smile. It reassures him things are ok, I am ok, they said. I tell him when I have to go to work and that I will be back tomorrow. I make it a point to greet him when I come and say good bye when I leave. Even, if I think he doesn't notice. I sit next to him or infront of him speak directly to him. I tell him I appreciate his cooperation and help by cooperating with the caregivers and explain by doing this, he really helps me. It is definitely Not perfect. I get frustrated all the time. More about activities - I bought some child puzzles but he was not interested, the same with word search, not interested. I sometimes toss a soft rubber ball with him but he's not that excited. I bought some kid bowling pins to see if he would enjoy that, nope. I have gotten some old photo albums out and he seems to really enjoy going through those. He tells the caregivers all the stories behind the photos. Dad had a Cath for about a week but wanted it out and has done fine. You can buy urine dip strips on Amazon to check the urine. I had his doctor give him a couple refills of oral antibiotics so I always have a course on hand if he has the beginning of a UTI to try to avoid the ER. He also takes D mannose and Cranberry supplement twice daily and that seems to have helped. Do what you can and take care of yourself

Be sure to include him in family activities even if he needs extra assistance. Take him along for grocery shopping or going out for lunch even if these activities require help. Wen he is able, enroll him in a "senior" class or two at a local Y or gym that has classes for seniors and accommodates physical and cognitive limitations. An aide or family member will be permitted to accompany him to these classes.



Schedule some regular activities each week.

These are all good answers so I won’t repeat. I didn’t hear anyone mention adult day programs. In our community we have two organizations that have day programs for seniors who’ve had strokes, other physical disabilities. They are really good programs. They run group activities, chair and wheelchair exercises, etc.
The two programs we have are for seniors who are cognitively aware. They don’t have to talk much since others present can often carry discussions. My father was embarrassed by his condition so shy-ed away from the group. He was more inclined to want family around and was content to stay home. But I know friends of his who loved the day program.

You’re GRIEVING for who he was, and that’s a perfectly expectable human emotion, but you’ve mentioned a few strengths that seem to be RELATIVELY intact, so for both your sake and his, capitalize on them.

If he enjoys being up and walking, chart his number of steps or his number of accessible locations in his first floor domain, and increase his numbers or places for a few steps every day.

Has he had a speech/language evaluation? If so, we’re you given techniques to support his use of basic language interaction?

If he didn’t have this kind of evaluation, you may be able to get one performed at home.

If he’s amused/interested by ANY common daily topics (weather? sports scores? news? entertainment?) watch programs about them on tv (using both vision and hearing), and gently attempt to evoke simple language.

ALWAYS offer choices of EVERYTHING, and expect him to point or nudge or respond verbally. Ask “yes/no” questions and give him enough wait time to indicate what he needs or wants.

For yourself, document his attempts at non-verbal interaction. Can he identify pictures? His name in print?

Rejoice with each small success. Hopefully you are trying your best to conceal your own sorrow. If he has potential to improve he needs to see your pride in his progress.

Brain damage is never 100% predictable. Try things, even if they seem silly. Don’t let him get too frustrated, but allow him the time to respond if he seems motivated to do so.

I’m going to do a search right now to see what’s online about this subject. When you have the time, see what you can find too.

My mom survived a devastating stroke when she was 85, and lived by herself (with discreet family supervision) until she was almost 90.

Have courage. You have him to hug and joke with and love and admire. Enjoy freely what you and he still have.

Let him be the guide, take your ques from him. What he is " doing" may be sufficient for him at this point; although frustrating for loved ones to watch the limitations.
Be patient with him and yourself.
Practice good " self care" so that you can remain strong for the long haul.
Seek competent emotional, spiritual, grief support via your faith community of choice and/ or other qualified support groups or 1:1 support for family members.
If you like, you can perhaps decide ahead of time some activity that may engage him and the two of you in a
" memory making" way; for example do some life review with him using pictures and share with him a favorite story/ memory that you have. Do this for perhaps 15-30 minutes periodically throughout the week IF he is able and allows. In other words don't get discouraged if he loses interest sooner than you would like. His body and mind are working hard and hence his energy levels are limited.
Explore with an occupational therapist some other activities that you can engage your father with that will be helpful for him and, bring meaning and purpose filled moments for you with him.
Love him. Love yourself.

Maybe a little off the mark, however, we were trying to get my mother to go AL for 10 years,many,many reasons. The answer was always NO.

She had stroke was afraid to stay alone at night, calling EMT's 3 or 4 times a week, they finally started billing her $600 per visit, well that didn't fly. Decided to let us move her near us and in AL. She was real depressed.

Loves, Loves where she is, has made new friends participates in activities, now she says
"I wish that I would have moved here 10 years ago, I was so depressed and had no desire to do anything, I just sat and watched game shows all day"!

Go figure, yes Mom we knew that! She will turn 98 in February. She now teaches sit aerobics 3 times a week, she has a desire to live, not vegetate.

Try different things, I feel like Mom stays home and watches TV all day or sleeps too, she had a stroke and aphasia so talking to people is difficult and has stage4 cancer now. After her stroke, she attended group physio and speech therapy, I would think the doctor gave you a similar plan. Your doctor and care workers with help with getting him back to a self care state. Mom got a mobililty scooter to get around, was a game changer for her, without that she can walk 10ft before she is out of breath. She refuses a walker. She likes to read and will go the library to get her books or go to the store to buy milk (note she might not come home with milk but the point is she does something). She will play bridge on the computer. She likes movies (so TV might not be a bad thing, maybe he likes sports or news, maybe help him find interesting content). She likes to paint knit sew and garden. I bought seeds so she can plant indoors even if they do not grow, and give her projects like fix a hem or sweater. We got some recipe books so she can contribute to her meal planning and she writes the weekly grocery list for us. She helps the family by folding the laundry She cannot see well and she does not do any of these things well, but we look for things she can do that have a contribution to something that makes her happy or to the family and she can do them at her own pace. when you see no interest in an activity or he is struggling put it away and try something else. Find activities for him that he enjoys and are at his capability level now. He will need rest to heal and recover from the stroke, so you have to take that into account.

A lot of my clients don't have enough humor in their lives. You Tube has stand up comedians to listen to, and there are joke websites online people could read to him. I think it's invigorating to, at the same time of day every day, open the window all the way for a few minutes to let fresh air in, then close it. If they can't go outside much. Non-verbal music is always nice. An Alexa would give him so much power. It knows all the oldies. You can even say, "Alexa, play oldies" or "Play 50s music". Or, "Play swing music". "Theater music". Etc... Access to a soft, furry, affectionate pet would be nice, too. He might like a care giver sometimes since there could be a different dynamic than with family. The warmer and tastier the food, the better. I see that men like to fiddle with the mechanics of things, so maybe some model cars or something along those lines even though his vision is impaired. Very few of my clients ever has done what really is best for them, which is physical therapy or exercise. If you can afford a cute exercise therapist he might do it. Socialization is good, too, if you can get some of his aquaintances in, preferably for a structured activity so they can build new memories not just hash over the past.

Good Morning,

I know it breaks your heart when you remember your parent how they once were. Mom walked 2 miles a day, went to daily mass, very involved.

You have to look at what they have left. A couple of suggestions.

Is Dad mobile enough to get around on an "UpWalker Lite". These things are a God send! $495 the best $$$ Mom ever spent. This gave my mother some freedom. Of course, 10 months later I was still on the phone along with emails, letters of Appeal to get reimbursed the 80%. We won in the end!

Good walking shoes are a must. When people are in the hospital and they lose weight they sometimes go down a 1/2 shoe size or more. I had my mother fitted at a high-end shoe store. This was her Christmas gift. No step-in slippers or area rugs in the bathroom.

Cranberry juice can fend off UTI's. My mother never had them until the Lewy Body then it was a nightmare. You have to wait until the UTI clears to find out their baseline. These UTI's can cause such a change in behavior. You have to keep these under control with drinking lots of water, not sitting a lot since the bladder will drop, etc.

Of course I realize when you are discharged from the hospital you have to get home and get settled. It takes a while. You don't want them jumping rope. They have been through a lot.

You can have physical therapy, occupational therapy, home blood draws and if your dad will have it request a male CNA for showering--all come to the house with the referral from your dad's Primary Care Physician. Definitely sign up for the portal since you will have test results at your finger tips without waiting by the phone for your doctor to call.

Two months in a hospital is a long time and I'm sure he was woken up, poked, new faces and lots of blood draws. Bright lights, noise, you can't sleep...

Keep your dad from being tortured with unnecessary testing, minimize blood draws and the Warfarin Coumadin is a nightmare with the INR so with your doctor's blessing Eliquis is more expensive but less invasive since there are no blood draws.

Have courage and be brave. Usually the patient "parent" will react the way you react. Act as if...oftentimes I want to have a good cry but if I do it will take away my mother's courage. Be confident and in control--a ROUTINE is a must.

They will follow your lead. You will learn along the way and in a year from now you will be a new person. I am learning more from being a caregiver than I did going to Graduate School. It will also instill in you a new set of virtues.

Sit and hold your dad's hand and tell him you have a family who loves you, a home and we will make sure you have everything you need. Amen Sister...

You are a good daughter...

Many good suggestions have been offered. The metric we use for interests, behaviors and desires in our younger years, is no longer applicable. We all have to remember to buy a new measuring stick! You said his mind is good and assuming he is not depressed - introducing him to online groups where his age and wisdom can be applied to help others might make his day more interesting if he is so inclined. Like if he was handy, “how do I?” Forums to fix things is one idea.

Of course we mourn the passage of time and what was - it is natural. You cannot live this time of life for him - just as you didn’t when he was younger. You cannot “fix” his suffering or his age. Just sitting and quietly accompanying him is perhaps all that is needed as you and he transitions to a new normal. Physical challenges are exhausting and maybe this amount of rest is to some degree also what is needed right now.

Carelotsss, as we age we have normal age decline. It can take us twice as long to do a normal routine item compared to a few years ago. Even showering can feel like a day at the gym.

I knew that when my parents were really aging, they could no longer walk 2 miles a day like they did for decades in the past. Dad now needed a walker and Mom had her cane. Dad didn't mind going outside with his walker. Mom refused to use her cane outside, didn't want the neighbors to think she was "old", Mom was 95.

Since both my parents had failing eyesight which could no longer be corrected, they were content to stay at home. They had their routine, such as getting up "with the chickens", breakfast, newspaper, nap. Lunch, TV, nap. Nap before starting dinner, watch the news, nap, and head upstairs for Johnny Carson.

It's all part of the circle of life. We aren't expected to do the same as what we did when we were in our 40's when we are now in our 70's or 80's. Throw in some hiccups that mess with our health that can change our patterns.

You are grieving for the dad you know longer have and that's ok, but you and he must now get used to his "new normal."
If he is content moving from one chair to the next, sleeping and watching TV, well so be it. That may be his "new normal" and he may be alright with that.
A major stroke changes everything, this I know. My late husband had a massive stroke at the age of 48, and developed seizures that he continued having until his death at the age of 72. And as my husband got older all he wanted to do was sit in his recliner and watch TV, and I had to be ok with that, as he was content.
Your dad too may just be content with what he's able to do now, so you too must learn to be content for him, and not remind him of all he's lost.
I hope he is on seizure medication(s) for his seizures, as having them after someone has had a stroke is very common. So is developing dementia down the road, so know that his life going forward will not be easy.
So just do your best to enjoy the little things and be grateful that your dad is home for the holidays.
And perhaps in time you may want to think about moving him to an assisted living facility(that has more advanced care available if needed)where he will be around other men and women his own age where he can get more socialization if he chooses.
Sending God's blessings your way for you and your dad.

That’s exactly what my parents do. They are 94 and at this stage of their life just getting through the day is challenging and exhausting for them. They like to stick to their routine and they have no desire to do anything but sit in a chair, nap and watch tv. When I’m visiting, we watch the price is right and family feud together. That’s about all the quality of life there is.

When hubby had stroke doc warned he would have high fatigue for the rest of his life. Hubby would improve in stages then plateau for a while. At first I would drag hubby everywhere shopping, parks etc etc and it help keep him active. After ten years from stroke all he does is sleep, eats and watch tv. Mostly cause I am full caregiver alone and got tried trying to keep up. With the loss of activity he has lost a lot of muscle tone. Hubby couldn’t speak or make noises at first but with speech therapy has gotten better. It just takes time. Hubby had zero interest in the therapy exercise so I started having him “help” me with things such shredding paper in shredder as I declutter the filing cabinet. Or collect the groceries bags as I unload the groceries.

my best advice is just continue to surround father with loving and supportive people. And be prepared to protect him from the jerks who give the negative vibe. And treat father in this new life as normal. Don’t make a big deal about the changes. Just move on and do what’s needs to be done without pity, embarrassment or insecurity. Hubby wears diaper now and we try to make it fun so I call the diaper “man panties” after the Big Bang Theory tv show which hubby loves. For a while there hubby needed soft foods to eats so I bought some pre made purée designed for people with swallowing concerns and thicken liquid. I would taste everything he would eat or drink. First I get ideal what he is dealing with as far as taste (some of the thicken water is down right nasty), it kept him from feeling alone and if I thought something tasted good I would kinda make a “yummy” big deal about it as encouragement.

Care,

I can relate to your situation very well.

My dad was very social and active before he developed heart disease and needed heart surgery.

He had his surgery and did well. Not very long after his surgery while still in the hospital he had a stroke.

He went to a skilled nursing facility for rehab, then to speech therapy but he was never the same afterwards.

Depression set in with my dad because he could no longer be independent. He had to stop driving and he was embarrassed about not being able to speak clearly.

About the only thing that was left for my dad was to watch shows on television. He even lost interest in that sometimes.

I don’t think that my dad was looking to be entertained. He appreciated just having his family around.

I’m so sorry that you are going through this with your father. It is sad.

Play games, read, take him for a walk?
Field trips? Rent a movie?