I am grateful that my dad survived a stroke, seizures and was discharged home from hospital after two long unresponsive months in there. The feeding tube is scheduled to be taken out soon but I am not sure what the urologist will do for the catheter since he does have a history of chronic urinary retention and enlarged prostate. He can ambulate with assistance and sometimes by himself around the first floor of our house. His memory is intact, but he has trouble with finding words to express himself. We don’t expect he will be back to his normal, but hopefully he will improve more to the point that he is independent in self-care. Right now, he is dependent on us for his self care and he needs supervision because we are afraid he will fall (not realizing he has a catheter in, his eye sight seems to be affected).
How do your loved ones spend their day? My dad sleeps, sits, move from one chair to another, watches TV and eats. I also get him to do some exercises. Aside from the above, nothing else.
I feel so sorry for him and cried every day seeing how he could not be as he was, independent and going/driving around as he wished.
I don’t know what else I could do to help improve his quality of life?
Field trips? Rent a movie?
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.
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.
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.
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.
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.
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...
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.
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.
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.
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.
Schedule some regular activities each week.
I want to mention to you and to Carelotsss that a speech therapist trained in working with brain injuries and geriatric issues can be very helpful with accessing and restoring speech and language connections, perhaps even more than neurologists, who are sometimes less aware of the tools a speech/language person uses often.
I also did a quick search online this morning and found many recommendations and suggestions for working at home with speech/language issues. Most of them are available at no cost.
Good for you for doing so many helpful things with your sister!
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.
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
A slice of dessert and decaf coffee or other beverage every day at a certain time.
ANYTHING to look forward to
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🙏🏻❤️
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.